John of Ohio

Discussion in 'Your Living Room' started by Sholly, Jun 6, 2011.

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  1. Imnoscientist

    Imnoscientist New Member

    I love a good typo.

    Reading this thread is kind of a mind field, a mind f*ck even. LOL.
  2. chrisj

    chrisj Guest

    [lowers tinfoil hat on head]
  3. Angelea

    Angelea New Member


    I couldn't agree with you more. I can't believe I am saying that. Lol!

    And I am extremely happy for you and your wife. Trigeminal neuralgia is certainly one of the most painful conditions known and I am glad she is no longer suffering.

    I think all anyone is saying is to proceed with caution when trying to figure out what is "causing your pain." Like the Hippocratic oath, first do no harm. Certainly it is possible to cause further harm to yourself through misguided experimentation. There is a lot of misinformation on the internet, as well as snake oil salesmen galore and when we are desperate, we are vulnerable. Not only that, it can be very difficult for the average Joe (not you Bulldogs!) to differentiate between something that makes physiological sense and something that is just simply not possible, no matter how good it sounds.

    So when experimenting, make sure you have a good understanding of all the potential risks before proceeding. No, science has not caught up with MM yet, but let's not throw the baby out with the bathwater either.
  4. chrisj

    chrisj Guest

    I thought that was me writing then....spooky! But you are more eloquent....
  5. Angelea

    Angelea New Member

    Lol! You're too kind.
  6. Henrysullivan

    Henrysullivan New Member

    Joe, she is doing great. She has her life back, virtually 100%. She still has to deal with some pain, but it is nothing like the 24 hour exquisite pain she dealt with for years. She is a trooper.

    I learned a lot dealing with Winde's chronic illness. I learned that if anyone is going to find their answers, they have to either push, or be pushed. There were days when Winde would be in the bed, (5 out of 7 were that way and the other two were dealing with exquisite pain on the job trying for others not to know, finally to end up back in the bed by mid-late afternoon), and I would come in to wake her up to tell her about the latest hair-brained idea that I had formulated. She would say, "Just leave me alone. It feels good to lie here." And I could have just let her lie there. If I had, she would still be lying there. But time after time, I would force her to get up and go to the next great thing treatment. There were times that she wanted to kill me.

    At the time we finally discovered the source of her pain, which was about two years after her major invasive surgery, she was on as much as a 100 micro-gram fentanyl patch. When the neurologist put her on that, he didn't even mention that it was habit forming, much less that when docs put patients on this sort of medication, they are not imagined to ever try to come of of it. That being the case, I suppose he didn't think it important to relay that information. So Angelea, your warning, and it is a good one, "So when experimenting, make sure you have a good understanding of all the potential risks before proceeding," extends not only to various treatments one might decide on one's own, but also to those one's doctor recommends. I could go on to relate how Winde almost died from aspiration pneumonia after her brain stem surgery, all due to carelessness in the hospital intensive care unit, giving her the one drug she had detailed ahead of time that she was allergic to. I could tell how that pneumonia required her to spend an extra 3 weeks in the hospital on IV antibiotics. I could tell how a compromised digestive system due to such an intense course of antibiotics allowed her to contract clostridium difficile, which if you don't know what that is, I can guarantee that you do not want it. I could tell you that, while home with pneumonia, Winde coughed so much that our two dogs, that we still have, still remember it. Ever since, anytime she coughs, one leaves the room and the other hides under my desk. It was that bad. They no doubt remember that when mommy coughs like that, she has to go away for a long time. Even the dogs remember how bad it was at the time, after almost 8 years.

    And the sad thing is that the surgeon advised this surgery on a hunch. There's your science for you. He had a hunch, nothing more than that, that an artery was pulsing on the trigeminal nerve near the brain stem. He had nothing to go on except his hunch. And this fellow is a world-class neurosurgeon who studied under Dr. Janetta at the University of Pittsburgh, who pioneered this micro-decompression surgery. So this was no fly-by-night surgeon. He was the best that medical science had to offer. And he performed the surgery flawlessly. I mean, I doubt very seriously whether I, or any of us, could drill a hole in someone's head behind the ear, remove the skull, cut all of the muscles and ligaments in the way, and pilot our ways all the way down to the brain stem, finding the 5th and 9th cranial nerves and where they attach, wrap these nerves with Teflon, pack all the stuff back into the hole, mix a concoction of plastics to pack the hole in the skull, an ounce of which costs as much as a small Toyota, sew the subject up, and have her still live. I mean, who of us could do that? No one. So the guy was very skilled at this surgery. But he had poor judgment. And we relied on his poor judgment.

    So I look at the potential downside of following certain expert medical judgments, some based upon nothing but hunches, and I look at the same for following non-invasive physical treatments or benign supplements, and your warning, Angelea, while still valid, turns mostly to press against the attitude that motivates someone to blindly follow the recommendations of medical science, rather than anything that the folks, such as myself and JOH, and others here speaking of their own experiences conquering Meniere's symptoms advise. So I appreciate the warning and the motivation behind it. But this is a warning much more appropriate for folks to read who are considering medical treatments, not anything I and others here are talking about. I do think it is a worthwhile warning though and thank you for it.

    Joe, as soon as I have a little time, I will write down Winde's story for you, and how that experience dovetailed into conquering my own Meniere's symptoms. I appreciate your concern for Winde. She is doing very, very well. Thank you.
  7. chrisj

    chrisj Guest

    And despite our differences of opinion Hank, I'm also very happy with Winde's health.

    I wish you many happy days.. :)
  8. Angelea

    Angelea New Member


    My heart goes out to you and Winde for what you've had to endure. I spent many years working in an ICU and now manage tube-feedings and IV nutrition therapies for a home infusion company. I deal with people everyday who have aspiration pnuemonia and c. Diff, and chronic pain. Terrible, terrible suffering.

    Your story makes me think of all I that I have seen go wrong with surgeries. Some of the worst complications I have seen from any one particular kind of surgery involve gastric bypass surgeries for weight loss. I know many, many people do have success with this surgery, but anytime someone asks me if they should consider it I cringe. I have seen people die from immediate complications, as well as from severe, chronic malnutrition or liver failure many years later. Not unlike your experience with world-class surgeons, many of these people were operated on by the best of the best.

    This doesn't have anything to do with anything, I suppose, except to say there are no guarantees in this life and we just have to make the best decisions based on the knowledge at hand at the time. While the doctors often don't seem to know any more than we do, we have to remember, too, that we don't know what we don't know. Just is what it is...

    Have a wonderful day all!
  9. Henrysullivan

    Henrysullivan New Member

    Thanks for those heartfelt sentiments, Angelea. And a great day to you!
  10. Henrysullivan

    Henrysullivan New Member

    And thank you, also, Chris, very much. Although we have not agreed on these things, I do like you and think you are a good guy.
    Regarding your sentiments, I can happily relate that although Winde has gone through more than a lot of us, she has come out on the other side of it. And because of what she has been through, each day is that much more of a gift; the sun is brighter, and the birds sing happier songs, truly. What she has experienced coming out of the other side, and what I have experienced doing the same with Meniere's, not only makes me wish and pray this for everyone else here, but also keeps me here typing.
  11. shartsoe

    shartsoe New Member

    [What she has experienced coming out of the other side, and what I have experienced doing the same with Meniere's, not only makes me wish and pray this for everyone else here, but also keeps me here typing.
    People like you are a treasure. All of you. Thanks each and every one of you for what you're doing.
  12. survivedit

    survivedit New Member

    Well said Henry. I couldn't agree more. So glad your wife found some answers.
  13. gert157

    gert157 New Member

    I remember Wende's story from several years ago, I believe it was about the time I told you of this Nucca Dr. in Illinois... I believe you made the long journey and met with that Dr. and the rest is history as they say.... I never went to that Dr. was never quite comfortable with his methods of payment, not accepting insurance, wanting x amount of dollars up front etc..... However I am glad he was able to help you and you took that leap of faith...... I too am very pleased to hear of Wende's physical well being, she is in a much different place than when you first told me about her health issues several years back....

    As far as you pushing for answers to the cause of things like MM for one, your attitude sounds much like "you do better when you know better" meaning after your own personal research you were able to ask the appropriate questions with a real sense of understanding what the drs were saying, that is wonderful and also gives you some control and power back (which only comes from knowledge in my humble opinion) you were able to be Wende's strongest health advocate as well as your own in treating the Menieres..........

    I wish you both continued good health and my, what a journey you both have been on......
  14. Taximom5

    Taximom5 New Member

    Thank you for distilling it into what really matters. THAT'S what it's all about!
  15. Henrysullivan

    Henrysullivan New Member

    Yes, Leanne, I remember it all vividly. And if anyone would like to read the blow by blow description of our visit to see Dr. Dickholtz, they can find it here,3874.0.html

    It was Leanne from whom I first heard of NUCCA. I did not come up with that on my own. At the time, I had been seeing a local chiropractor who claimed to be sufficiently versed in upper cervical chiropractic. And his treatments affected my Meniere's symptoms. And even though my Meniere's symptoms subsided and were under control, I never felt quite 'right.' I felt like there wasn't enough space in my head. Perhaps some folks here have felt that way on occasion.

    I was using a cervical traction device. And after each session of traction, I felt like there was more space in my head. Still, after a time, the extra space went away and I had to use the device again.

    As it turns out, the local chiropractor Winde and I had been seeing was adjusting both of us 'backward.' He was making us both even more out of adjustment, and with a technique that rivaled the feeling of an Indian rope burn. Not until we got to Dr. Dickholtz' office did we discover that the local guy really had no business performing that kind of adjustment. Dr. Dickholtz, 85 years old at the time, one of the original founders of NUCCA, told us that both of us were found in a really strange state of adjustment, something he rarely sees. So I have no doubt that thie weirdness he found was due to those backward adjustments.

    I cannot remember exactly what I knew when, but it wasn't too long after we got home from Chicago, 750 miles one way, that it was apparent that we were going to need a local provider. And that is when I found our local office, 45 minutes from our home.

    So if it were not for Leanne, I'm not sure where my quest would have taken me. But we are blessed to have the best, most talented provider just 45 minutes away. And he has made all the difference for both Winde and myself.

    So thanks very much, Leanne. Perhaps some day I can repay you.
  16. gert157

    gert157 New Member

    No need to repay, I'm just very thankful Dr. Dickholtz set you and Wende on the right path to wellness, I would do it again in a heart beat... I can't even quite remember where I read of Nucca, it was so long ago, but when I shared the info with you, you took the bull by the horns and ran with it to inform others, I am thankful to you for that......... I hope it has helped many..........
    Take good care, wishing you great wellness, both of you,
  17. Henrysullivan

    Henrysullivan New Member

    Regarding the motto that has been at the bottom of every post I have placed on this forum, "You are your own best doctor. Everyone else is merely a consultant," Here is something I wrote over 4 years ago, which in my mind has never been more true, and which seems appropriate in the light of the comments above.

    "'We are our own best doctors.' Perhaps I should expound. I am in charge of every facet of my life; you are of yours. That means I am in charge of my health care. That means I should seek direction from the best sources available. Sometimes that means a medical doctor. Sometimes that means a chiropractor. Sometimes that means a pharmacist or even a television commercial. Medical doctors can do great things; they can also make great mistakes. I'm in charge of me. I have a vested interest in me. No doctor, no chiropractor or pharmacist has the same interest in me that I have. Therefore it is up to me to use reason and select the care that works best for me. When I select my own health care, I act as my own doctor. I have veto authority. I possess more authority than the doctor. Therefore, it is up to me to find out why a doctor wants to give me a particular treatment. It is up to me to understand as much about that treatment as I can, and then to evaluate whether that treatment makes sense to me. I must use reason to warn myself prior to a medical doctor making a great mistake with my health. Have you ever heard it said, "If you have your health, you have everything." Before my wife's neuralgia, before my Meniere's, I never completely understood that. Now I understand. If you have your health, all things in your life are possible; you have everything, every possibility. If you do not have health, the possibilities are restricted.",3080.msg71083.html#msg71083
  18. Angelea

    Angelea New Member

  19. abigail48

    abigail48 New Member

    sometimes it means reading old texts: jethro kloss' back to eden got me enlightened as to natural health which stood me in good stead until I was 70 -/+. now I follow it closer. & I did make a mystake awhile ago: juicing fennel before knowing it was estrogen specific hugely.
  20. deadeye

    deadeye New Member

    hey guys am trying the vitamin c route started taking 2 teaspoons a day (8000 milligrams) plus 3 pills (3000 milligrams) is this enough? thanks

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